228 Chapter 8 Instead, I performed a qualitative evaluation on the implementation of PROMs at the HIV outpatient clinic of the Erasmus MC. This research (Chapter 6) showed that patients, in general, are willing to complete a PROM before their consultation. This finding is supported by our ongoing study in patients with lung cancer. Patients assume that healthcare professionals are interested in their answers on the PROMs, and that it can help the healthcare professional by giving them more information about how they are experiencing their health. I, however, also found that some patients do not see the added value of completing a PROM before their consultation, especially if they do not experience any health problems. This finding is particularly relevant for patients with inherited bleeding disorders who might increasingly experience non-tolimited health problems due to new treatment modalities 15,16. Moreover, this finding, in combination with the low response rate on the PROMs, confirms that communication on the aim and relevance of the PROMs as well as how PROMs data can be used to help them, is essential to convince the patient to complete the PROMs17,18. Part III: Variation in care provision Part III of this thesis focused on identifying possible meaningful variation in the care provision for patients with hemophilia. I provided an overview of the care pathway that young patients and their caregivers follow within five of the six hemophilia treatment centers in the Netherlands (Chapter 7). Although young patients with hemophilia and their caregivers follow similar care trajectories, I identified several differences in the care provision for this patient population across the five hemophilia treatment centers. Most of the identified differences could be attributed to each treatment center’s need to adapt its care provision to its own specific location and resource constraints. I, therefore, do not expect that these warranted practice variations negatively influence patient outcomes. However, these variations in care provision may influence patient experiences with care or patient perceived quality of care. Combining the practice variations with patient outcomes, and especially patient but also healthcare professionals’ experiences with care provision, can provide insight into possible areas of improvement. The identification of these areas of improvement can form the starting point for a continuous learning and quality improvement initiative within the care for patients with inherited bleeding disorders.
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